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Spotlight: Pain Awareness

Pain is one of the most common MS symptoms. How do you manage your pain on the bad days?

  1. I certainly appreciate the wonderful articles regarding pain awareness. I relate to many of the symptoms others write about. Yes, it is frustrating! Yes, chronic pain can change a person! Absolutely changed me. I have great family support and an awesome husband. He is my hero for always going above and beyond. I feel guilt for just being "mush" sometimes, being alone in my bedroom when I need to be left alone to recover. Ugh 😑 I try to stay positive but it's so difficult. Thank you again for posting informative articles.

    1. Hi Caya. Thanks for posting in the Pain Awareness forum and for all your kind words! Sounds like you have a great support system in your family and husband. Sometimes staying positive can be so difficult but know you're not alone and the community is always here. - Kelly, MultipleSclerosis.net Team Member

  2. I can't say that I contribute pain to MS. I really can't say I have
    a lot of pain anyway. I'm 69 years old and once in a while I have a pain from somewhere or other but I can't say it's MS or aging or osteoporosis perhaps. I was having a lot of pain from my HRT medication. I came off of it and now I'm miserable without it so I may go back on it only taper it and see what happens. That was real pain but it wasn't from MS. If it comes back and I guess I have to come off it for good.I don't know what MS pains other people have but pain has so many origins how can one even say if it's just from MSor some other neurological problem or from any other problem. Overall I can't say I have much pain at all. I do have occasional back pain but I do sit around a lot I'm also getting older and I had some deterioration in my DEXA scan on my spine. When I first came down with MS, the first big symptom I had was transverse myelitis. And even with that I had no pain I had numbness in my body and feet. The only other symptom I had for maybe a few years before I was diagnosed were MS hugs. And I had no idea what they were and neither did my internist. And I guess for some those can be very painful. With medication I don't get them very often and when I do I guess you could call that painful but it's not enough to say that I'm in pain. I just wait till it's over and then whichtakes maybe a few seconds up to a few minutes and it's more of a crushing sensation that it is painful sensation

    1. Hi Sara! Thanks for posting and for being a part of our community! As Stephanie says in her article 50 shades of pain (https://multiplesclerosis.net/living-with-ms/the-50-shades-of-ms-pain/), pain seems to impact everyone differently. - Kelly, MultipleSclerosis.net Team Member

    2. I get MS hugs as well, and for me they are painful! I feel like someone is crushing my abdomen!! They are an 8-9 typically, but thankfully they come and go. My neurologist doesn't treat me for the pain and that is where I get frustrated!! A friend of mine has gone to see an MS specialist and I'm thinking about going to see him as well! Maybe that will help.

  3. I've had pain - the every single day stabbing migraine type - right side of head, neck and entire upper back since I was diagnosed shortly after my 18 year old college freshman was born. In fact, the pain is what led to the MRI to diagnose the MS at UCSF by a leading researcher that I was fortunate to be put in contact with through a friend of my dad's. Now I am with Stanford health care as of the new year (we were with Kaiser for 6; a huge mistake, frankly). At Stanford the my doctor at the neurology clinic has diagnosed me with chronic migraine, of which I am getting Botox shots for - the third treatment is in 3 weeks. This is separate from the MS, that doctor and her fellow have decided and I go to the MS clinic for the MS. My spine is involved from neck to past my waist now however; this does happen I believe, when I'm having an exacerbation. What do i do? I meditate before leaving my bed most mornings; if I'm not sleep well, I meditate when I'm awake at night - or write...do I cry some of those very painful early mornings? Yes! It sucks! Nobody should have to live like this! Is my partner there for me? Yes - mostly - and he brings me breakfast and my supplements before leaving for his busy job. Then I swim - or just get into the water if I don't feel good enough to swim. If that works a little I garden a bit or begin my writing for the day. I'm reading and following the book - Writing as a Way of Healing right now. I do have a medical cannibas card from the state of CA...I use a CBD vape and they do work well for pain. I exercise if I'm better than an 8 usually. I have found that even if it's painful, it's a necessity. I have an elliptical machine at home. I've done yoga for 4 1/2 years now as well. Yin yoga is great for pain and knots...there is a lot on Youtube including yoga for MS videos. My favorite is Yoga with Adriene; she's awesome. I've always been active and love hiking the hills around our neighborhood or riding bikes with my husband. Can I always do those activities lately? No. We've learned to be flexible and I've been convinced by my husband and 3 kids that this is ok...my kids tell me I'm the bravest person they know.

    Are there days when these measures put together do not work? Of course! - that is when I say, around 5PM: If all else fails, nothing can beat a good IPA...or two.

    1. Hi Annie! Thanks for sharing how you manage pain day to day! Nothing like a good IPA 😉 – Kelly, MultipleSclerosis.net Team Member

  4. I get advertisements now for this over-the-counter cannabis
    oil. Has anybody tried this to see if it helps. They say it's not something that gives one a high. Curious about this.

    1. Hi itasara! While medical marijuana can be used to help manage MS symptoms, I would be leery of using any cannabis from an online advertiser. If marijuana usage is legal in your state, you may want to look into some reputable sellers. While marijuana may not work for everyone, you may look into it, if you think it could potentially be helpful. Here is a good piece about medical marijuana usage. You may also want to check the comments following the article -- https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/comment-page-1/#comments. Good luck and thank you for reaching out! Best, Erin, MultipleSclerosis.net Team Member.

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